Here’s a report on our day at the Women’s Centre in Dunkirk Refugee Camp. A huge thank you to everyone who donated to the GoFundMe campaign — we raised £1600 and every penny is already making a difference.

This thing started off because a friend of mine went to the refugee camps in France a few weeks back on a journalism assignment. We happened to meet for lunch the day after he returned and he told me about the Dunkirk Women’s Centre, which was doing incredible work creating a safe and welcoming space for the camp’s 150-strong group of women and their children. There had been recent reports of a problem with sexual violence in the camp, and there was an ongoing need for nappies for both adults and kids – so neither had to risk going out into the camp to find the toilets after dark.

Frankly this was all news to me. I had wrongly assumed that after the Calais Jungle closed that the system and situation just 30 miles from the UK had improved. That must be the case, I imagined, as I was no longer hearing anything about it on telly or in my FB feed. Which sounds silly when you say it out loud, but there it is.

Anyway, long story short, it seemed like a good idea to not use this as another opportunity to whinge about how fucked up the world is, and instead to actually try to do something about making things even just a little bit better. I spoke with my friend Laura and we figured we’d just hire a van, start a crowdfunder, buy a stack of nappies and drive over to deliver them. We originally planned to put some donations on someone else’s van, but since the Calais camp closed the supply runs from the UK seem to have dwindled and we couldn’t find a van making the trip, so we decided to drive one ourselves and see if we could fill it with the essentials.

Our friends and family were incredibly generous — the crowdfund target was originally set to £200 but over the weeks the donations rolled in and by the time we were due to drive off, the campaign had hit a massive £1600. Amazing. That’s 1300 size 6 nappies, over 500 adult women’s disposable pants, 50 tubs of sudocrem, 100 bottles of baby shampoo, 60 children’s beakers, 100 sponges, 10 bottles of washing up liquid, 1000s of baby wipes and 12 pre-loaded 3 data sim cards, as well as a bunch of clothes and pots and pans donated by some of the kind people in our apartment building. We hired a van, bought petrol and booked our Eurotunnel tickets, with a little money left over for a direct cash donation to the centre. We were ready to go.

Dropping off donations was really easy. It is literally a 3 hour drive from London to Dunkirk with a 30 minute snooze on the Eurotunnel. The Dunkirk camp is just 20km up the road from the Calais terminal, and the supply warehouse is about a 1 km outside of the actual camp, really close to a supermarket complex. It was simple case of driving in off the motorway. The warehouse is well manned and organised with drop off stations for clothes and kitchen equipment, as well as a dedicated room for supplies for the women’s centre.

Van full of donations

Our donations in the women’s centre warehouse room

The Dunkirk supply warehouse

As we began unloading the van we were met a couple of girls volunteering in Dunkirk from Gynecologie Sans Frontieres. They helped us bring everything inside, and thankfully seemed really pleased with the things we had brought. “Yes, we need this,” they kept saying, which frankly was a relief as while we had stuck pretty diligently to their ‘urgent needs’ list the centre had emailed me two weeks before, it seemed hard to know whether they would still need these things 2 weeks and many donations later. Size 6 nappies however are always in demand, they said, and we saw for ourselves that the supply room was stacked high with size 2 and 3 nappies for small babies (of which there is only one in the camp), compared to just a few packets for the size 6 toddlers, of which there are scores.

We asked the girls from GSF about whether it would be worth us visiting the women’s centre itself, to see how things were set up and if there was anything else we could do to help while we were here. In my emails and text messages with the volunteers at the centre they had asked if we would be visiting them, but even with their encouragement the idea was something we were a little hesitant about; we didn’t want to get there and find ourselves just awkwardly hanging around unable to do anything useful. The GSF girls however didn’t hesitate — ‘of course you should go,’ they said immediately. They gave us directions and a few minutes later we had parked up and wandered towards the security portacabin past four large police security vans. We signed in, and in we went.

The main road at Dunkirk Refugee CampThe first thing you notice in the camp is that, unsurprisingly, it’s pretty bleak. Pot holed puddled roads are flanked by rows of wooden living huts, each with a number painted onto the outside. One was painted with the words ‘I do not want to be here.’ We couldn’t see the centre. We could see a lot of men — young, generally in black jackets and skinny jeans, milling around alone, in pairs, in groups. No one seemed to particularly notice us, but as two girls we still suddenly felt conspicuous. Even though I’ve been in environments like this before, I was pretty aware that this wasn’t the kind of place we wanted to be hanging around in without a clear sense of where we were going.

Luckily, we noticed a small group of volunteers in high vis jackets close by. They told us they knew where the women’s centre was, and so we followed them along the main ‘road’ through the camp until we reached wooden structure painted with a sign advertising free women’s clothes. The women’s centre. After a few awkward moments at the door unsure of whether to enter, we were welcomed with warm smiles by two of the volunteers running the space, and invited inside.

Main entrance to the centre. Shoes to be left at the door.

Ribbon bunting and toys in the centre

Quiet room for classes

The centre couldn’t be more of a contrast to the space outside. Bright, colourful; decorated with bunting ribbons and fresh painted murals, a wood burning stove in the middle of the seating area to keep everyone warm. There are posters on the walls advertising creative workshops and baby weaning classes, and around 10-15 women and half a dozen toddlers are sat around knitting, painting nails, drinking tea. Men occasionally drop by with kids, and wait outside at the main door for them to be escorted to meet their mums inside. It really is a safe haven for the 100+ women here, operating in a very difficult environment, and is the only women’s centre still running in the camps in this region.

Baby playtime poster

Today’s painting workshop

We are there about 5 mins before one of the senior volunteers walks over and asks which of us is most practical. I say Laura is: so now Laura is off with long-term (2 month) volunteer Liz to replace the locks on the women’s toilet doors so they’re more secure. Not such an easy job, as it turns out. The door frames need new holes drilled in them to make space for the lock bolts, and the only drill in the camp is quickly running out of battery. Over the next hour, Liz and Laura are trouble-shooting. Maybe they can find a battery. An adapter. Maybe a rock and a screw will do the job. Maybe they can fit blocks of wood to the doors and fit the locks on those, so the bolts slide across the back of the door frame and don’t need new holes drilling at all. But where can we find wood that’s sturdy enough? And screws? And a saw? They head off towards the phone charging station in search of tools.

Meanwhile, the centre’s longer term volunteers invite me to start organising the stock from the warehouse that has just been brought to the free shop next to the women’s centre, so I spend the next few hours sorting through bags of shower gels and shampoos, socks and scarves, stacking size six nappies on top of each other. There was no shampoo left this week, but now there is loads, so we refill the empty boxes from bags brought that morning from the place we had just visited with our donations. Occasionally women come to the door: one searching for a towel to dry her wet hair after a haircut in the centre, another whose baby is sick and needs more nappies. The shop is officially closed, but it seems urgent so we start sorting through boxes picking out the sized 5s.

The stock list for the women’s centre free shop. Female refugees can visit Mon, Weds and Fri afternoons to stock up on essentials.As I unpack and restock, new volunteers join me, others pop in to say hi and see how things are going. They ask how long we’re staying and whether we can come back sometime. A trickle of new volunteers arrive throughout the afternoon, some who have been before, others for the first time like us. The spirit of the place seems to have this positive and open, ‘everybody muck in’ attitude. If you’re here, you’re here to help, and that help is warmly welcomed. I was honestly surprised by how quickly we were treated as part of the team, and therefore how familiar these volunteers must be with integrating new people into their cohort every day.

After an hour or so I realize Laura had been gone for a while. I wander to the ladies toilet portacabin and find her with Liz amongst around 8 security guards and camp officials (none of whom we had seen at any other point in our day). I really wondered where they had suddenly come from. There is a mix of shouting and arguing and then some laughing, mostly in French. It seems they were not at all happy Liz and Laura had attempted to fix the doors locks by drilling into them, by themselves, as these toilets ‘belong to the mayor’s office’. This seems faintly ridiculous under the circumstances, and after some long deliberations and Liz’s French repetition of the words ‘the locks don’t work, the women are scared’, it seems like the logic of having women’s toilets that actually lock is not lost. Soon enough, one of the camp guards arrives with what appears to be the only large drill on the site and sets to completing the work Laura and Liz started.

There is clapping and cheering when he finishes the job. The crowd has grown and everyone is laughing, mixing languages and giggling at Liz for trying to fix the locks with a long screw and a rock. Everyone seems to be feeling pretty happy that a small solution to an important problem was found, even if it’s one that’s been there for weeks and no one in the official set up has addressed until Liz and Laura decided to take it on.

It’s 4pm suddenly, and we have to leave to get the Eurotunnel home. We wander around finding people we’ve met and worked with that afternoon, hugging and saying goodbyes, before slowly wandering back out of the camp. It’s a total cliché to say it but as we leave I don’t really feel intimidated any more. We know the terrain, we recognise some faces as we pass. One of the men shouts after us telling us to ‘smile’, and we realize he has a Brummy accent and wonder what on earth he is doing here.

Music at the phone charging centreAt the phone charging station near the camp exit, we’re surprised to see a crisp clothed string quartet plays Balkan beats to a crowd. It’s a strange site, a weird burst of normality. In the bustle and the baseline, two of the guys spot us and sidle over, asking us in halting English if we play music. We are being chatted up. And out of nowhere an emotional wave hits me. It really hits me that this is just a place for people who simply do not have a home. Teenagers, women, children. Guys like these two who sigh as we walk away. They are stuck in a life of limbo, without a home. It keeps going through my head and body — these are just people like us, without a home. These are people like us, without a home.

We get to wander out easily, back into the van, onto the Eurotunnel, back to our London flat for dinner time and an order of take out food, which all just feels really weird. Meanwhile this temporary stretch of land to the south of the motorway near Dunkirk there is a barely bearable shelter for around 1500 people who have no other option, sleeping in rickety wooden huts, no electricity after 6pm, cold, damp, without locks on the toilets, unsure of what will happen to them next. According to local reports, the camp is likely to be cleared in the not too distant future. No idea what the plans are for it’s residents.

One thing that is without question however is that this sad state of stasis is made better by the tireless work of a few volunteers — like those at the women’s centre. Just normal people taking some time out of their lives to inject a sense of safety and warmth and colour into the bleakness, while making sure the women and children get the essentials they need.

We’re really pleased we got to help for a day, and really humbled by the donations of friends to this cause. We saw exactly where and to whom that money and those nappies are going, and trust us, it will make a difference. Thanks to everyone.

Finally, here’s a picture of a post-it on one of the walls at the centre. I liked it, and thought you might too.

If you’d like to support the centre or find out more about their work, you can visit their Facebook page, or just make a donation on their brand new website. You can share this story with your friends. And of course, you can always drive over and volunteer for a day or a week or two — you’re always welcome.

If I’m honest, I felt nervous about this trip. “The world is unsafe” has been the media message of the year, like a relentless drum tapping heightened vigilance into my nervous system. It seems I let those suspicions in a bit, and felt an unusual sense of solo travel trepidation as my plane took flight to Istanbul (gunmen! ISIS!) before pushing on to Jakarta.

It took a week at least before I fully let those fears go. With each interaction, they became weaker and less sure of themselves. Every broad smile, every open-handed welcome, every ‘hello miss!’ shouted from giggling kids emerging from homes in a gaggle to catch a glimpse of us – the foreign people. The fears were drowned out by the sunset orchestra of clacking cicadas and 90s Bryan Adams tracks blasting from old radios. They were extinguished by the echoing thump of torrential rains, the crack of twigs underfoot, the soprano calls of unfamiliar birds at 4am, the shared laughter at language misunderstandings, the silence. It started to seem like there’s far more peace beyond our green and pleasant lands than there is within them just now.

It’s been good to be out here – travelling across Flores not seeing another tourist for days. Out where the seas crash on black sand shorelines, where hot volcanic springs hit cold mountain waterfalls and dense rainforests stretch for miles in a tidal wave of deep green. Where 2016 was a good year because the rains came and rice crops were good and babies were born healthy.

In these more remote Indonesian islands, most people smile on sight. They don’t know the word Brexit. They haven’t heard of Trump. Villages and towns work the same as they have done for centuries, save the screen shine of mobile phones. It’s been good to remember there’s a whole wide wonderful world outside our bubble.

That world is changing, of course. People tell us that the weather isn’t always so predictable, but it’s ok for now because when it rains more than usual they just plant peanuts instead of rice. Luckily, on Flores, they’re mostly out of site from the big companies and government contracts. But on islands beyond the ones we visited ancient forests are being cleared and rare animals find their territories shrinking. This unruly planet is being forceably tamed.

While at the same time, we foreigners seem to be less at ease. In Bali a teacher said to me that she thinks my country is “agitated”. She said she sees it more and more in people who come here from the UK – a quickness to react, an expectation of threat rather than goodness, a readiness to reward cynicism. I recognise this in myself sometimes.

So here are the things I want to do in 2017: keep travelling to new places. Don’t let unfounded suspicions about the world take hold. Donate to the Rainforest Trust. And maybe listen uncynically to Bryan Adams once in a while.

And big thanks to Martin and Jen for being really great travelling friends – it was wonderful to share this trip with you!

It’s 1am and I am sat with my lap top in a bar in Cologne with my incredible teammates Claudia and Dave, working for the 3th night straight on our brand new company – PowerCouple.

72 hours ago, we didn’t know each other, and PowerCouple did not exist. We were just a group of people hopping on the StartupBus at 8am on a Saturday morning, barely prepared for the crazy roadtrip through Europe that would follow.

StartupBus redefines the word ‘crazy’. Normal things, like bedtimes, and mealtimes, and conversations that don’t resolve around coding and marketing, become a strange and distant memory. Everything becomes about the creation of a new idea – something new to offer the world.

You can read more about how PowerCouple will change your life right here. But the message is simple – it is better to do new activities with others, than to on your own. You’re more likely to stick. You’re more likely to feel better about what you’re doing. You’re more likely to let that thing change your life.

And I know this, not just because all the research says its true, but because StartupBus has been exactly that experience. At points, I’ve wanted to quit. The sleep deprivation and the heated debates and the impossible deadlines. At points, I’ve wanted to cry. Exhausted, confused, stuck. Let’s face it, at points I was throwing up into a bucket as a result of motion sickness while simultaineously trying to do a revenue projection calculation. There have been a million points where I could have held my hands up and walked away.

But I didn’t, for one reason. My team mates and the other mentors who have put this thing together. They made me think it was possible to find to keep going and ride the next high . And because of that, we are in the finals tomorrow, and we get to compete with the best startups in Europe. And we want to win. And we think we can.

We are five weeks away from the UK General Election. That’s right, fiveweeks.

A shock, given that we have yet to see any real debate or discussion from our future leaders on any of the things that actually matter to people’s lives. Or have we?

I decided to test this hunch. I reviewed the media coverage from the past week to uncover whether the key parties bothered to say anything of real substance and interest on the big issues that matter to the electorate. Or have they just spent the week joshing and jockeying between themselves for kicks. Let’s see shall we.

> So what matters to the electorate?

ComRes/ITV, March 2015

First, the election issues. According to the latest poll by ComRes/ITV, the big issues people care about are: the NHS, immigration, the economy, and welfare/benefits — in that order. That list broadly matches a BBC/Populus survey from January, which showed that the issues the electorate most want the media to cover are: NHS, the economy, immigration, welfare/benefits/pensions, and jobs and pay. I decided to go with ComRes as it’s more up to date. And shorter.

> How do we know if politicians have said anything substantive on these issues?

A quick and dirty method. I reviewed the front pages of three newspapers — The Guardian, The Telegraph and The Sun — for the week 17 March – 24 March — to see if an announcement had made the headlines. Big thanks to Nick Sutton’s Tomorrow’s Papers Today tumblr…it was surprisingly hard to find an archive of front pages.

To be honest, I didn’t have time to review articles beyond the front page, but I figured that if the party/politician is announcing something of real substance, it should make it onto the front page. (Admittedly, there are many arguments that challenge this assumption. Having been a government press officer for a time I know first hand just how much news from government totally fails to get media pick-up. But that’s another blog.)

Anyway. To get a bit more 24/7 coverage in the sample and to make up for my front page bias, I also reviewed the Facebook feeds for C4 News, ITV News and BBC News for the same period. What I was looking for was any policy announcement-led news from any party on any one of these big issues over the past week.

> Here are the results.

Hot issue number 1 – the NHS (number of pieces of coverage: 4)

There was nothing at all from any party on any of these media channels until today. This evening, Channel 4 made a valiant effort to get the parties to say something of interest on healthcare. They invited both the health secretary, Lid Dem Health minister and shadow health minister on the show for a ‘#YourNHS debate’. They served three Facebook posts on the matter over the course of this evening (as well as an earlier post on Cameron being shouted at at an Age UK event.) There was some discussion between the parties on how to meet the £8billion shortfall in the NHS budget by 2020. Few clear differences emerged however, with Jeremy Hunt and Andy Burnham largely agreeing with each other that treating cancer is ‘a good thing’. Thank god.

But aside from that moment on Channel 4 today, a deafening silence from the politicians on the NHS.

Hot issue number two – immigration (number of pieces of coverage: 0)

Nothing at all from the politicians on these chosen media channels all week. The Guardian is however running its own special report on the benefits of immigration, presumably in the absence of anyone else making a cogent argument on the matter. But putting aside this media-led reporting, none of the major parties have tackled immigration in any way this week. Probably this is a good thing – at least it keeps Farage off our screens for a little longer. So let’s not complain too much on this one.

Hot issue numbers three and four, the economy and welfare (number of pieces of coverage: 24)

The budget announcement on Thursday managed to put a big tick in the ‘Economy’ box, and a bit of a pencil mark in the ‘Welfare’ box. Well done George — front page and Facebook news points across all outlets for a pile of measures including cutting income tax rates, ISA benefits, some changes to pension pots and extra funding for mental health services.

Admittedly, this a bit of a cheat, as the budget isn’t strictly a manifesto pledge from a potential new government. But still; I was becoming a bit depressed by they sheer lack of announcements on the issues (without the budget we would have been on zero again). So I’m including it. Policies were announced and plans were made, all on issues that people actually care about, and in a substantial enough way to make it onto all three front pages. The Sun’s effort was particularly entertaining. (It’s worth noting this was the ONLY political story to make The Sun front page all week. Zayn Malik’s hiatus from 1D has been much bigger news in their world.)

And what about all the general leadership / coalition / candidate based shenanigans? (number of pieces of coverage: 14)

This entry was written as more of a personal essay than a blog post. Grab a cup of tea & take your time. I hope you find it helpful.

A few weeks ago, my friend and yoga teacher Fiona Agombar shared the news that a girl she knew who was struggling deeply in her first year with ME/CFS, had taken her own life. She was 33 years old – the same age I am now. Just last year, before her illness, she had travelled around Australia in a camper van.

I had never met this girl, but I immediately felt a kinship with her. I too was diagnosed with that same illness around 6 years ago, and at a similar age and with a similar backstory of adventures and achievements. Like her, I was devastated by the loss of the life I had known at the hands of this illness, and by the complete lack of hope I saw in my own once sparkling future. I could absolutely relate to how she probably felt in those weeks running up to taking her own life.

Had I had the chance to meet her, we might have talked about this illness. And having spoken to others in the same situation, I know she would probably have asked me how I’m doing now.

I would have said that since those dark two years in the beginning, each year has been a bit better, and work, and travel, and love, and nights out are no longer off the cards. I might have told her I go to dance classes now. I surf. I run a business. I write this blog. I might have told her that the illness is still with me at times, and that’s sometimes frustrating, but that it is also often a helpful warning sign that I am off-course somehow. I would tell her that I’m not sure I would even categorise myself as having ME/CFS any more, which means, I guess, I’ve recovered.

It might have helped. It might not have. As her spirit leaves us here, it is pointless to wonder what might have been.

And yet, there are many others in her place, in the place I was in and she was in, who right now, today, are still with us, and who are still struggling through the hours. I would like to have a conversation with them, you, about some of the things learned over these 6 years since that diagnosis, that helped me navigate myself into a better place.

So I’m publishing this, nervously, out loud. I hope it might help someone. Here are 7 truths I learned, which helped me in my recovery and saw me through the darker times.

1) Recovery is possible

Recovery is possible. Recovery is possible. RECOVERY IS POSSIBLE.

It’s worth saying again and again, because for much of the time this statement feels like the most ridiculous statement ever uttered. The idea of recovery becomes about as likely as the existence of Santa Claus. Like a kind of myth or fairytale. Something that sounded nice and all, but was also utterly unhelpful. ‘Deal with the reality,’ I thought, hearing the same the doctors and the long discussions in ME-related internet forums.

But while it’s true that it’s futile to simply sit and wait for the morning you might wake up feeling fine, it is also a truth that recovery is possible. And I know this, because I have now met many people who have done it. In fact, a critical part of my own recovery was surrounding myself with people who have recovered. I read their books. I went to their seminars and workshops. I marvelled at their stories – people sicker than I was, who were now running yoga schools, or studying for PhDs, or being meditation teachers, or travelling the world.

The recoveries weren’t over-night miracles. They were often the product of years and years of light effort; slowly refocusing and rewinding thought patterns, becoming more mindful, more joyful. Rearranging lives, friendships, influences, homes. Changing habits. Leaving and taking responsibilities. Slowly treading one step forwards (and then often two steps back again) towards forging a different way of being; one that creates better conditions for healing.

I also began to trust, at some level, it could be so for me too. I always felt very sick, back then, but there WERE some days, or at least hours, that were better than others. Which told me, MY BODY DOES KNOW HOW TO FEEL BETTER THAN THIS. It hasn’t forgotten. It hasn’t lost the ability to improve and heal a little, even if only for a few minutes. And if it could do that for a few minutes, who could tell me it couldn’t recover for longer than that one day?

Take that leap of faith. For me, the point where I began to stop seeing ME as something I needed to just live with, and started seeing it as something I also wanted to learn to recover from – no matter how long it took (and it did take years, and sometimes I’m still recovering) – was a turning point in my journey.

2) You are not alone

For me, the profound loneliness that came from having ME/CFS was almost worse than the illness itself. Many didn’t understand how I felt. Some dismissed it out of hand, or confused it with depression, or decided I was ‘just run down’, or concluded it was all in my mind.

And then of course, there was the energy that simple conversation could take out of me. I began to almost fear conversation for that very reason, and tried to find ways to limit one-on-one time with others because I found it so exhausting. Which naturally made making and nurturing connections even harder. And we need connection. We are human. We are social animals. Our souls thrive when with others who allow you to be who you are, however you feel.

You are not alone. There are many others who know how you feel. There are many more who will want to understand. And more still who you can connect with regardless of the ME, through your shared love of…whatever it is you love: music, meditation, film, nature.

Find those people. Your friends. Your family. Support groups. Even the Samaritans helpline (believe me; those guys came to know my voice pretty well). Practice being honest about how you feel and what you need. Say if you’re struggling. Say if you need help. Say if you need a rest, a break, a catchup that’s less about actually catching up and more just being in each other’s company, quietly. Reach out to the people whom you can share your sadnesses and your hopes with; with whom you don’t have to hold up a mask. Those people are out there, and they will love you anyway.

3) Some things can actually give you energy

It can be the biggest surprise to people with ME/CFS that sometimes, they can feel better than others. Sometimes, an activity can actually give, rather than take energy. For me, I found conversation hard. But I could spend an hour or so painting. And often, even if it took a week, writing a 500-word blog post (on this very blog) would fill me with a profound sense of joy that would fill the following days with a warmth and an easiness, even if physically I was still feeling like lead.

Energy flows when you feel easy, light, and content. When you feel open and able to act in accordance with your own needs. Energy can’t flow when you feel obligated or oppressed.

Ask yourself regularly: ‘what would I really like to do right now?’. Tune in to how you really feel and what you really want. If you don’t want to do whatever is facing you that day; if it feels like an obligation or a pressure, and you know you won’t feel better for it, give yourself the option of not doing it. Just the option. Because you might find that when you take that control back, you actually want to give whatever it is a go. Or not, and that’s fine too.

I remember sitting on the sofa at my parents’ house, my body feeling like it had been filled with concrete, and my face so painful from the tiredness that my eyebrow was twitching involuntarily. My mum would come to me and tell me it was time to go to a yoga class. Raising the energy to even stand up felt like it would require an act of superhuman will. But I would drag myself up. I would walk in a mental haze to the class – round the corner from our house. I would get to that yoga room and breathe.

I can’t lie and say it made me feel better. I still felt rotten – my limbs heavy and my eyes sore. But I did have the tiniest ounce more energy than I had when I was sat on that sofa. I held onto that truth — for me doing some light yoga with my mum made me feel like I had just a tiny bit more energy. So keep doing it. Even though it takes a superhuman level of willpower, keep doing it.

Four months into my illness, I remember being so frustrated with the blank look on my doctor’s face that I instead went to a complementary therapy centre for the first time and checked in for some ‘energy healing therapy’. For a full 1 hour (which seemed like an age compared to the ten minutes by doctor could spare), I had the therapist’s undivided attention. She told me my ME was curable, and was caused by some stress-fuelled energy block in my body, and would ask me to close my eyes as she held her hands above me and hummed. She then charged me £70 and booked me in for 5 more sessions. I left feeling sceptical, and hopeful, and hopeless, and a little poorer, all at the same time. I remember feeling like this wasn’t the right thing for me, but I literally had no idea what else to do.

I didn’t go back to her. I didn’t really trust her, and I knew she couldn’t miraculously cure me. But I noticed that just the having someone to talk to, helped. And I noticed that something about what she was telling me was right – that our bodies are more than just skin, flesh, and bone; that our energy can be affected by the way we live; that stress had become habitual for me; and that caring for and relaxing my body was going to be important.

Over the years, I tried acupuncture, reflexology, yoga, meditation, emotional freedom technique, CBT, Reiki, massage. I tried breathing exercises and hypnotherapy. Along the way, I wasted a lot of money – staying with some therapists long after I felt they weren’t helping me. Doing some things – like homeopathy & some of the more extreme ends of nutritional therapy – which I fundamentally don’t agree with or trust, just because I was desperate. Spending a small fortune on stacks of supplements that did nothing for me, or worse, made me feel even sicker.

But I also found some people to whom I now owe much of my health and life. Yoga teachers, like Fiona. Meditation teachers, like the wonderful people in the Triratna movement who teach mindfulness meditation for free at lunchtimes all over the country. The people in the psychology practice at the Optimum Health Clinic. A Bowen therapist who has since moved to Australia, whose wisdom helped me better understand what was happening to me and how to trust myself more. And amidst the plethora of supplements and diets on offer, I found some simple things that helped me, like D-Ribose & laying off dairy for a while.

The journey through complementary therapies and nutritional approaches can be tricky. It’s important to be open to things that might help. But it’s also important to be vigilant about not continuing to pursue approaches that don’t. Only you will know the difference. Trust your instincts.

5) Get a bit spiritual

I grew up in a cautiously atheist family. My mum is the kind of woman who would take me to Sunday school for the singing only, popping me into the church hall only once the sermonising was over and done with. At school, I remember our class visiting a local minister and him asking who among us didn’t believe in god. I was the only one in the class of thirty-two to raise their hand.

And yet, I could not possibly have coped with ME/CFS if I hadn’t put some of my own reason and scepticism about spirituality to one side. By which I don’t mean suddenly attending church once a week (although I did do that for a while). I mean by asking some of the bigger questions that you’re forced to ponder when you have very little you can actually do with your days.

For me personally, it wasn’t Christianity but Buddhism that I found most practically useful as a means to coping with my condition and finding some answers. For a start, the first truth of Buddhism is that life is suffering. Now this was a truth I could agree with. But it also teaches that there is a way out of suffering, which is by accepting what is, rather than craving what you don’t have (like health) or trying to fight against what you do have (like ME). And how do you do that exactly? By practicing acceptance, compassion, and mindfulness. Through that, can come peace.

Compassion and a sense of peace were two things I didn’t feel much of while I was really sick. Developing the spiritual side of myself – reading books by the Dalai Lama, listening to talks by Pema Chodren, learning to meditate – those things gave me the beginnings of a glimpse of a feeling of peace, even in the most painful of times.

Vidyamala Burch, a meditation teacher from New Zealand, has been almost paralysed and in deep physical pain for much of her life. For her, the biggest moment in helping her find peace in the pain was when she realised that she didn’t need to struggle through the night, or the hour, or even the next ten minutes. She just had to get through this moment. And this one. And this one. The moment is all there is, in fact. In the moment, if you can be with it and not fight against it, even in the darkest of times, there can be a kind of exquisite ease.

6) The story you tell yourself matters

So quickly, ME/CFS impacts so many parts of our lives that it’s easy to allow it to define us. ‘My ME/CFS’ – I would say. I suffer from it. It’s easy to feel wronged by it. It’s easy and natural to feel cheated. It’s easy to feel bitter and angered by the injustice of it, sometimes closed to the world that ‘doesn’t understand’.

All that is natural. But it took me a long time to realise that these are feelings to experience, feel and move through. Not feelings to hold onto, harbour, retell and reinforce until the whole of life operates through the ME/CFS lens.

ME/CFS is with you, yes. But it is not all that you are. ME/CFS is awful and painful, yes. But it can also be a teacher and an invitation to live differently. ME/CFS is a daily, hourly, minute-by-minute challenge, yes. But none of that means the present moment can’t be peaceful and light, just as it is.

I remember speaking to a friend who had ME/CFS about that feared moment when someone you don’t know, who doesn’t know about your illness, asks you the dreaded question – “so what do you do?” How do you answer that? “Well…I have ME/CFS you see, so I can’t do much of anything.” Silence. Awkwardness.

For many with this illness however, that answer isn’t a true reflection at all. Yes, I used to think, I do have ME/CFS. But I also practice yoga. I read. I try to be a good friend. I love to learn about current affairs. I, sometimes, on a good day, enjoy walking my dog. I might not work a 9 to 5. Some days I might struggle to leave the sofa. But that doesn’t mean my life is only about ME/CFS. It isn’t only about that.

There are people with ME/CFS who are famous, world-renowned authors. Artists. Coaches. Teachers. Therapists. There are people with ME/CFS who have won awards and acclaim. There are people with ME/CFS who have set up support groups. Debate groups. Painting groups. Meditation groups.

There are people with ME/CFS who for whom just getting out of bed every day is an act of heroism. People for whom writing a text message to a friend on their birthday might take hours of ‘trying to concentrate’. Those people are amazing too.

It might take us longer to do, well, anything. It might mean our goals become smaller and more local. Things that took a few hours might now take a few weeks, or even months. But life is long, and we have time. I remember realising…I could actually walk a marathon, if I wanted. I might take me a year. But I could do it. I could.

The story you tell yourself matters – it shapes the whole way you see your world and your future. Only you can choose what story it is you’re telling and the role you’re playing within it. Are you more often casting yourself as the victim, or the warrior? Are you on a journey towards illness and sadness, or growth and recovery? Have you been wronged by the world, or did the world challenge you in a new and unexpected way?

You still get to choose. You might have ME/CFS, but it’s still your life. Your story.

7) Be gentle with your language, and let go

There are times when the business of recovering from a deeply painful and debilitating illness can, in itself, be a deeply stressful experience. For me, trying to work out how to get through the days was, in itself, layering more and more cortisol and anxiety onto my already struggling nervous system. Unsurprisingly, it didn’t help very much.

One therapist I saw told me a couple of years in that I use the word ‘should’ a lot. ‘Should’, ‘need’, ‘ought to be’. She said to me, “wow, it must be hard being you, constantly on the receiving end of how you talk to yourself.”

What she was telling me, not so subtly, was that I was treating my recovery like I had treated everything in my life. Harshly. With high expectations and high standards and high demands. Telling myself off when I fell short. Telling myself I ‘should’ be doing better by now.

She invited me to think of some other words I could use. Words like ‘I wonder…’, instead of ‘I should…’. Like saying ‘I’d like it if…’, instead of ‘I need…’.

She invited me not to take the ebbs and flows of my illness so personally. ‘That’s interesting,’ she invited me to say when I noticed a new pain or a wave of fatigue, seeing if I could find a way to treat the bad days with curiosity rather than crushing disappointment.

She invited me to let go of the outcome. I might get better. I might not. I might feel stronger tomorrow. I might not. None of that made me any more or less worthwhile as a human being.

I still forget all this at times. I still get caught up in a spiral of ‘whys’ and ‘what ifs’. I find myself scrambling about for reasons and justifications, fielding my own frustrations and accusations.

But then, sometimes, I notice the tightness around my chest, and I see what I’m doing to myself, and I breathe. I form the words, ‘I wonder if…’ in my head. I wonder if I’ll feel better tomorrow. I wonder if it matters if I do. I tell myself it’s all ok, and that this is hard stuff for anyone to deal with, and that I’m doing my best. I feel my body smile a little. I ask myself what I’d really like to do right now, and more often than not the answer is ‘watch the West Wing’, or ‘listen to Radio 4’, or ‘call my mum’, and so I do that. And I stop fighting for a moment, and I feel lighter, and some of the energy returns.

I hope some of this helps you too. This is hard stuff; it would be hard for anyone to deal with. You’re doing your best. Maybe you’ll feel a bit better tomorrow, maybe you won’t. None of that makes you any more or any less worthwhile as a human being. You are always more than your illness, and having your illness make you a hero for even getting up in the morning. And even with this illness, you can still experience peace, and joy, and lightness, and have moments of energy and connection. And all of those experiences are part of the road to recovery.

You can recover. You can. You can.

You can.

I would love to hear your thoughts and experiences on all this, if you’d like to share them. Please feel very free to post in the comments below.

In London’s Tate Modern right now, in the midst of the brilliant Conflict Time Photography exhibit on the 3rd floor, is a curious set of rooms called A Guide for the Protection of the Public In Peace Time. It’s a strange space curated by a group called the Archive of Modern Conflict; apparently a publishing house concerned with artefacts of the past; forming them together in new and unusual ways. And in this room of propaganda and subversion, I see this image on the wall.

I was, its fair to say, pretty stunned. You see, I’d seen this image before. It is the cover image for a comic picture book called Album De La Revolucion Cubana, which I found on a market stall in Plaza des Armes in old Havana back in May this year. It’s now perched on my Hackney living room bookshelf.

A bit of a surprise, I can tell you, to see something you picked up at a market for a tenner displayed on the wall of one of the world’s greatest contemporary art galleries. And seeing it displayed in this way lead me to want to find out more about it.

The book itself is fascinating. Designed for children, it is a blow by blow retelling of Castro’s guerilla war with Batista’s government from 1952 to 1959. What makes it particularly special though is that each scene in the revolution is told by an individual picture card, which it seems were given away with cans of Felices canned fruit, collected and stuck into the book by kids. I remember when I got it how struck I was by the design and approach – it seemed to me to be a particularly overt piece of marketing designed to sell the story of the revolution, which is kind of ironic given this is a country that deliberately closed itself off to the usual blends of brand capitalism.

Castro, of course, is presented as the hero, inspired by Jose Marti’s Cuban independence movement in the 1800s (that’s his face hovering in the sky behind Fidel on the book’s cover), and flanked by his brother Raul and of course the beautiful Che. Each page comes with illustrations of guns and grenades, Cuban flags and army tanks, and even though the commentary is in Spanish, the drama jumps out of the illustrations – underhand backroom dealings by Batista, the suffering and sacrifice of the Cuban people, the bravery of the guerillas, fighting for the future of their country.

There’s a fair bit of chatter about the book online. Over on dropby, one Cuban man describes it as “a plaything from my childhood” which he since found in a restaurant in California – owned by a man who also found the book in Havana’s Plaza des Armes. Then on the Libriquarian site for ‘the sale of fine books’, the curators are displaying the Album with a $2000 price tag.

For a moment I’m pretty excited. Not that I’d sell my copy of course. But to see that others have found it too and recognise it as a special piece of history reminds me of my own wide-eyed excitement when I flicked through its pages back in the hot Havana sun.

On closer inspection however, it’s very clear that mine is a copy, rather than an original. The pages are too white; the picture cards are tinted in a distinctly photocopied way. Nevermind. It’s the symbolism of it I like – somehow enhanced by the fact that some enterprising market stall owner has decided to occasionally recreate the full thing now, in 2014, sticking in each of the 271 pictures by hand in the hope of selling it at a profit to a tourist like me.

Confronting the implications of a potential yes vote on Thursday is not something I feel prepared for. I sit here, in my flat in London, many hundreds of miles from Scotland, feeling the distinct sense that the world might possibly change this week, and that had I been paying real attention I would have known that and been more ready to speak up and make my case.

But, much like the rest of England, I wasn’t really paying attention. I knew the referendum was coming up — my mum who lives in Manchester has been talking about it for months. But here, in London, it hardly registered as news, that is until the yes campaign pulled ahead last week, and the Evening Standard finally started covering the political posturing north of the Borders, and all of a sudden we began expressing surprise at the prospect that we might well wake up this Friday and no longer live in the United Kingdom.

I’m not prepared for that eventuality. More than that, I feel wholly disempowered in influencing whether or not it comes to pass. Don’t I get a choice about which country I live in too? Don’t I get a say whether I call myself British or English?

Furthermore, should Scotland leave, I’m dismayed at what I’m left with. A country (what country exactly?) that has so poorly been able to articulate what it means to live in a United Kingdom, that the thrust of the campaign in Scotland is based on fear, scarcity and withholding. Not – ‘this is what you are saying yes to if you stay’, but ‘this is what we’ll take away from you if you leave’.

No more currency. No more BBC. No more jobs in financial institutions who will all flee over the border. No more free movement of people. No more Team GB.

Yes, they say. Take it all, they say. But while you’re at it, take the Westminster politics. Take being ruled by Etonians who have no idea what it means to grow up sharing a bedroom with their brothers or to have to save up pocket money to buy a cassette tape or to need a Saturday job. Take the media who confuse England and Britain in every bulletin. Take the London-centric politics and the austerity cuts and the consignment of the disabled and elderly to the scrap heap. Take it all, they say. We’re better off without you. We can do better.

It’s a debate I want a piece of — I want to have a hand in defining the nation I belong to. It’s a debate I want to have. It’s a debate that’s long overdue and largely ignored; here in London where property prices are raging and recruitment agents are calling. I want to shout about how that reality ends the second you get outside of the M25. I’m furious I don’t get a piece of this nation-defining debate, the affects which country I wake up in on Friday. I’m embarrassed that I sleepwalked through the point when there might have been the opportunity to do so.

And if I did? I would shout about how proud I am that my Welsh father and half English, half Scottish mother have taught me to see the world without borders. Have encouraged me to choose my own nationality. So my brother calls himself Welsh and I call myself British, if I have to call myself anything at all. How we all support Wales in the rugby and England in the football, except when they’re playing Scotland, when my mum slips sides with the agility of someone who knows deeply that these national allegiances don’t mean anything substantial — they’re all just tools we play with and laugh at and that bad people sometimes abuse, stirring up passions and fostering kinship in good times and bad, for better and for worse.

That’s my United Kingdom. A place where there is still an unspoken, very British, understated sense of a truly revolutionary idea — that national identities and ethnic identities and racial identities are all fine and good, but really and truly they’re not what really matters. They aren’t what counts. You can wave your football scarves and sing your anthems, but at the end of the day we can sleep in peace knowing they shouldn’t be taken too seriously.

I hope Scotland sees that. I hope Scotland enjoys the nationalistic passions and posturing, but sees it for what it is — real, but insubstantial. I hope Scotland can still spy the potential for a United Kingdom which says ‘yes, we might be of different nationalities, but that doesn’t mean we’re not better off standing under the same umbrella’. Not so much that we’re ‘better together’, but that we’re better for trying to be.

I hope they agree that that’s an idea it’s worth us all saying yes to – whether we vote on Thursday or not.

We’re in a back room of a Korean restaurant, sat around a low table contorting Western knees into a cross legged position that probably hasn’t been attempted since school assembly days. For most of us that was a very long time ago.

We’re here to listen to this man’s story of how and why he escaped North Korea, and what he thinks about things there, and here, in this leafy Surrey suburb just a 20 minute train ride from London Waterloo.

He’s a youngish looking forty-something year old. He nods at our English-speaking questions, then looks to the women on his right to translate them into Korean. Even with the ‘lost in translation’ translation, his speech holds to a regular pace. Then she translates his words about “escaping from hell” in the same way – with the even tone you might use for giving directions or reading a shopping list.

He grew up trusting the system, he says. He grew up learning that it was good, and that South Korea and America were bad. It was only when he joined the army and travelled around the country that he realised that it wasn’t just his village that was suffering.

He began to experience doubt. When asked to cook a meal for the soldiers, the only way to get food is to steal it from a nearby farm. “How could this be good?” he says. When he visited his sister, she deprived her daughter of food so he could eat. He didn’t know she had done so – only finding out when his niece, left alone, came across a bag of corn supplies, ate and drank water too quickly for her malnourished stomach, so it bloated and burst. She died, and it was then he knew he could not stay in North Korea.

He didn’t know if it would be better somewhere else. He didn’t know anything about what it would be like on the other side of the river. He couldn’t tell anyone he was thinking of trying to get out. Every third or forth person was a spy. Army personnel were required to ‘confess’ once a week on anything they had heard or seen that was suspicious.

He says he felt he had to try anyway. He says he was curious.

His crossing took four and a half hours. The water was shallow and every 50 metres there was a guard. At one point he bumps into a rock, and finds it is a soldier sleeping.

I ask him if he thought he would make it.

He says no. But he was willing to take the risk.

In one pocket he had a knife, and in the other a candy bar. You die or not, he says. Had he been caught – and he thought he would be caught – he would have killed himself. And the candy bar? He says he thought he might need to do a lot of walking if he made it to the other side. He would need it for energy.

When he reached the other side, he says he saw an apple tree, and it was then he knew he had been deceived by his country. The ground beneath the tree was scattered with rotting apples. This was unthinkable to him, he says. That food would be so abundant that it would be left to over ripen and rot on the floor.

He says that escaping takes courage. He says that that river to him represented the difference between heaven and hell.

He says he has no regrets. He says though that he thought the regime would change within 10 years and he would be able to see his parents again. It’s been nine years now, and it hasn’t changed. And his parents are getting older.

And so the story ends, and we walk back out onto Kingston Road in South West London, bellies full and collars turned up against the February cold.

I can’t stop thinking about the guts of the man – to go it alone, with a knife in one pocket and a candy bar in the other, with no idea what it would be like on the other side. Just in the curious hope it might be better.

For the latest news on North Korea, visit www.nknews.org/. To visit North Korea there are a number of tour operators who will take you in from China. Try Political Tours for an in-depth look at the place and its people.

1) The soul balm calm of sunset on the massive Zambezi river. With a beer. And hippos.

2) Justice the game reserve guy at Chobe saying that if a lion charges us, he would “handle the situation”. Despite not having a gun. Moments later, we happen across a lion and its cubs eating a baby elephant carcass. Justice seemingly unruffled.

3) Loads of water crashing into a massive crack in the earth. Seriously cool. And very wet. And worth the US$30 park entry fee.

4) A friend of a friend taking me up over Zimbabwe in this rather dodgy looking micro light. You can usually only do this tiny propeller plane thing in Zambia for about US$150, so was very lucky to fly up on the Zim side for the price of a tank of petrol. And to survive.

5) The very UK civil service style immigration communications; complete with a ‘mission statement’ and ‘client charter’, complete with regal picture of ‘his excellency’ Cdr. Robert Mugabe. I very much liked the social media feedback mechanisms on this poster in Zim/Botswana border control.

6) The greenness. And the elephants in the road.

7) Realising this strange protected beautiful bubble of a place is virtually on the axis of four countries. Safe, friendly, expensive. Loved it. Miss it already.

As I fly into Zimbabwe on the SA40 from Jo’Burg, I read a passage in this book called ‘Africa Trek’. which talks about border crossings. The author is saying that you can tell a lot about a country by the mood at the border. And if he had to categorise the mood at the border of South Africa and Zimbabwe, it would be ‘sad’.

I’m wishing I hadn’t opened this darn book. ‘Sad’ is not what I’m hoping for when I touch-down at Victoria Falls. If anything, I’ve been feeling optimistic. In Cape Town, South African after South African has been telling me how beautiful Zim is, and how things there aren’t as bad as they have been in recent years. But here’s this passage, and it reminds me how much trauma and breakage this place has seen.

The twist to and the reason for my ‘enter Zimbabwe’ tale is that my mum grew up here. Back in the late 1950s, my intrepid grandfather couldn’t resist the idea of journeying for weeks on end on a boat to this relatively unknown and vast continent, putting his engineering skills to the test on a new power station in the tiny village of Munyati, 270km from the nearest city of Bulawayo.

And so my mum and my uncle grew up with strange accents, their childhoods packed with giant animals and wild landscapes and running around barefoot until the soles of their feet were like leather, seemingly miles from the struggles over rights and justice playing out all across this epic land.

Those tales were told to my brother and I from our earliest days, and so, Zimbabwe has always existed in a kind of mythical stasis in my head. Over the years I’ve met many other children of that Rhodesian generation, and we’ve recognised in each other a similar heritage of both awe at our parents’ fantastical upbringings, and a kind of time-travelling shame at the wider political environment in which they lived.

And yet, as the plane touches down, I fill up with sensations of connection and nostalgia; the kind usually reserved for a long-overdue homecoming. I practically run to the tiny terminal, excitedly joining an ordered queue as we file into Victoria Falls’ passport office, commenting on the humidity of the middle day. My fellow travellers are from all over the world – China, Japan, Germany, Australia. I’m here alone, but I don’t feel alone. I see my name on a taxi board and soon drive off down a clean new tarmac road; lush green forest on either side and, above the tree-line, the billowing spray of the Falls, ‘the smoke that thunders’. Within an hour, I’m on the mighty Zambezi river, the sun setting behind palm trees as families of sleepy hippos bob around in mercury waters beneath a sky of fast flocking birds.

This journey into Zim felt professional and ordered, calm and warm. No doubt, we’re in a protected space here, a long way from Harare or Bulawayo, or any number of towns and villages beyond international view. But it is a better entry than I could have hoped for, and a more emotional one too.

So if I were to pick one one word to define this border crossing, I’m not exactly sure what I would choose. But ‘sad’? I don’t think that’s it. Not here, at least.